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Author Topic: rheumatologist says i have fibromyalgia and CFS  (Read 1753 times)
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ElizaabethR
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« on: September 10, 2012, 06:34:18 PM »

Had an appt with a rheumatologist last wednesday. She was very nice and I wish I had seen someone earlier.  It seems my gp is very supportive in the fact that he diagnosed the CFS in the first place but 18 months further on its up to me to suggest maybe I could see other people - like i now have a referral to a clinic that deals with long term illnesses and I have now very quickly seen the rheumatollogist.

Anyway - although i have been quite ill since the appt I thought it was a good one.. 
She proded and poked to see which bits of me hurt and she said I had fibro as well as cfs.  She was also testing for sjogrens syndrome at my request and @I think I have to wait to see about that.  She took a lot more blood tests that my gp did and said she would see me in 4 months unless they cfall me back sooner after the restuls come through. 

We did talk though medication though and I said nothing is helpijng really.  I am on amitryptiline 20 mg at night which I don't tjhink is doing anything and I am zopiclone for sleep which again I don't now think is working.  She said we can either tackle the pain relief or the sleep but not both at the same time.  She said I could put the amitriptyline up ~(although my gp said not to which I did mention to her) and she suggested gapapentine or another one which I couldn't cat the name off but sounded like the end of gapapentine and I thnink it began with "n".

I know have thought of loads of things after the event that I wanted to ask her

I will see if i get recalled earlier due to the test results but if not might ask if I can go back sooner.

Any comments gratefully received.

My pain is getting worse and although I have always been quite positive i am getting very down now especially as I keep getting rejected by the dla and I feel I need and deserve it.  Also I have just received my annual renewal for ESA to fill in !!!!!!!!!

Eliz x
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Blue Fairy
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« Reply #1 on: September 10, 2012, 06:53:55 PM »

 s_hi Elizabeth

I think overall that seems like a good appointment. It is good that she is being thorough with the testing.

I am sorry you are having such trouble with pain, though I will say that there have a been a couple of people recently saying that Gabapentin has worked well for them. I know that is what my CFS consultant often prescribes, although I've never had it (don't have many pain issues).

If you write down all the things you have thought of afterwards you could take them to the next appointment.

I do definately think you qualify for DLA from what you have said previously and I think you have been treated shockingly by the system.

Good luck with the ESA50  fingerscrossed
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ElizaabethR
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« Reply #2 on: September 10, 2012, 08:01:53 PM »

Thanks bf

Good advice abough making notes and am  more amd more thinking gapapentin may    be the way to go

Eliz x
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carrie
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« Reply #3 on: September 11, 2012, 03:31:50 AM »

Gabapentin gave me horrendous side effects, it is a great drug for those that can tolerate it but it doees affect some people quite badly, I couldnt stand it made me so dizzy and unsteady, I ended up collapsed on the sofa all day unable to even go to the bathroom or get myself a drink whilsst my hubby was at work as it made me so unwell so beware but I would recomend trying it

I wass diagnosed with fibro along side my ME many years ago, I have to take slow rellease morphine for the pain as I have back problems also I also take oramorph to top up when needed, I was on tramadol for about 7 years though
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ElizaabethR
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« Reply #4 on: September 11, 2012, 09:03:19 AM »

My husband was on tramydol for  crps and it causedtremendous problem s so not going that route

Eliz x
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